I Was a CF carrier for 29 yrs

laurieb5 · Jan 15, 2008

I was diagnose as a carrier at age 6 and today 29 years later I was just diagnosed with 2 CF mutations
F508 and 3849+10KbC-T. My Mom and I are lost for words we thought once you are a carrier there is no way for
CF to fully develop? My older sister died at age 16 from having CF so my Mom is pretty much freaking out. I allready made
an app to see a top CF specialist here in Miami Florida in about 3 weeks. My sister died 20 years ago and I know treatment for CF has come a
long way since 1987 so I'm very optimistic <img src="i/expressions/face-icon-small-smile.gif" border="0"> that I will be okay.

If you have a similar history please let me know because I have a lot of questions that need answers
thank you

~*Laurie<img src="i/expressions/face-icon-small-confused.gif" border="0">

laurieb5 · Jan 15, 2008

I was diagnose as a carrier at age 6 and today 29 years later I was just diagnosed with 2 CF mutations
F508 and 3849+10KbC-T. My Mom and I are lost for words we thought once you are a carrier there is no way for
CF to fully develop? My older sister died at age 16 from having CF so my Mom is pretty much freaking out. I allready made
an app to see a top CF specialist here in Miami Florida in about 3 weeks. My sister died 20 years ago and I know treatment for CF has come a
long way since 1987 so I'm very optimistic <img src="i/expressions/face-icon-small-smile.gif" border="0"> that I will be okay.

If you have a similar history please let me know because I have a lot of questions that need answers
thank you

~*Laurie<img src="i/expressions/face-icon-small-confused.gif" border="0">

laurieb5 · Jan 15, 2008

I was diagnose as a carrier at age 6 and today 29 years later I was just diagnosed with 2 CF mutations
F508 and 3849+10KbC-T. My Mom and I are lost for words we thought once you are a carrier there is no way for
CF to fully develop? My older sister died at age 16 from having CF so my Mom is pretty much freaking out. I allready made
an app to see a top CF specialist here in Miami Florida in about 3 weeks. My sister died 20 years ago and I know treatment for CF has come a
long way since 1987 so I'm very optimistic <img src="i/expressions/face-icon-small-smile.gif" border="0"> that I will be okay.

If you have a similar history please let me know because I have a lot of questions that need answers
thank you

~*Laurie<img src="i/expressions/face-icon-small-confused.gif" border="0">

laurieb5 · Jan 15, 2008

I was diagnose as a carrier at age 6 and today 29 years later I was just diagnosed with 2 CF mutations
F508 and 3849+10KbC-T. My Mom and I are lost for words we thought once you are a carrier there is no way for
CF to fully develop? My older sister died at age 16 from having CF so my Mom is pretty much freaking out. I allready made
an app to see a top CF specialist here in Miami Florida in about 3 weeks. My sister died 20 years ago and I know treatment for CF has come a
long way since 1987 so I'm very optimistic <img src="i/expressions/face-icon-small-smile.gif" border="0"> that I will be okay.

If you have a similar history please let me know because I have a lot of questions that need answers
thank you

~*Laurie<img src="i/expressions/face-icon-small-confused.gif" border="0">

laurieb5 · Jan 15, 2008

I was diagnose as a carrier at age 6 and today 29 years later I was just diagnosed with 2 CF mutations
F508 and 3849+10KbC-T. My Mom and I are lost for words we thought once you are a carrier there is no way for
CF to fully develop? My older sister died at age 16 from having CF so my Mom is pretty much freaking out. I allready made
an app to see a top CF specialist here in Miami Florida in about 3 weeks. My sister died 20 years ago and I know treatment for CF has come a
long way since 1987 so I'm very optimistic <img src="i/expressions/face-icon-small-smile.gif" border="0"> that I will be okay.

If you have a similar history please let me know because I have a lot of questions that need answers
thank you

~*Laurie<img src="i/expressions/face-icon-small-confused.gif" border="0">

wuffles · Jan 15, 2008

Hi Laurie

I think where you're getting confused is that you don't "develop" CF -- you are born with those two defective genes. So previously, when you were diagnosed as a carrier, they would have done a limited test which did not screen for all mutations. Delta F508 is the most common mutation and I am assuming this is the one they found in you many years ago. Your other mutation is uncommon so it was probably not tested for all those years ago (or possibly not even "discovered" yet!).

I don't want to confuse you any more, but do you know what mutations your sister had? If she had a different mutation to you, it's possible that one of your parents also had two copies of the CF gene.

If you have made it to your age without a diagnosis it sounds like you are relatively healthy thus far. It's great that you have made an appointment with a CF specialist. They will help you be proactive about your future treatments. I'll be honest and say that your lifestyle will probably change a lot at this point, but keep in mind it's all done to keep you healthy!

I'm sure other people will have more to say, or you could try the Adults part of the forum -- it is usually more active.

Good luck!!

wuffles · Jan 15, 2008

Hi Laurie

I think where you're getting confused is that you don't "develop" CF -- you are born with those two defective genes. So previously, when you were diagnosed as a carrier, they would have done a limited test which did not screen for all mutations. Delta F508 is the most common mutation and I am assuming this is the one they found in you many years ago. Your other mutation is uncommon so it was probably not tested for all those years ago (or possibly not even "discovered" yet!).

I don't want to confuse you any more, but do you know what mutations your sister had? If she had a different mutation to you, it's possible that one of your parents also had two copies of the CF gene.

If you have made it to your age without a diagnosis it sounds like you are relatively healthy thus far. It's great that you have made an appointment with a CF specialist. They will help you be proactive about your future treatments. I'll be honest and say that your lifestyle will probably change a lot at this point, but keep in mind it's all done to keep you healthy!

I'm sure other people will have more to say, or you could try the Adults part of the forum -- it is usually more active.

Good luck!!

wuffles · Jan 15, 2008

Hi Laurie

I think where you're getting confused is that you don't "develop" CF -- you are born with those two defective genes. So previously, when you were diagnosed as a carrier, they would have done a limited test which did not screen for all mutations. Delta F508 is the most common mutation and I am assuming this is the one they found in you many years ago. Your other mutation is uncommon so it was probably not tested for all those years ago (or possibly not even "discovered" yet!).

I don't want to confuse you any more, but do you know what mutations your sister had? If she had a different mutation to you, it's possible that one of your parents also had two copies of the CF gene.

If you have made it to your age without a diagnosis it sounds like you are relatively healthy thus far. It's great that you have made an appointment with a CF specialist. They will help you be proactive about your future treatments. I'll be honest and say that your lifestyle will probably change a lot at this point, but keep in mind it's all done to keep you healthy!

I'm sure other people will have more to say, or you could try the Adults part of the forum -- it is usually more active.

Good luck!!

wuffles · Jan 15, 2008

Hi Laurie

I think where you're getting confused is that you don't "develop" CF -- you are born with those two defective genes. So previously, when you were diagnosed as a carrier, they would have done a limited test which did not screen for all mutations. Delta F508 is the most common mutation and I am assuming this is the one they found in you many years ago. Your other mutation is uncommon so it was probably not tested for all those years ago (or possibly not even "discovered" yet!).

I don't want to confuse you any more, but do you know what mutations your sister had? If she had a different mutation to you, it's possible that one of your parents also had two copies of the CF gene.

If you have made it to your age without a diagnosis it sounds like you are relatively healthy thus far. It's great that you have made an appointment with a CF specialist. They will help you be proactive about your future treatments. I'll be honest and say that your lifestyle will probably change a lot at this point, but keep in mind it's all done to keep you healthy!

I'm sure other people will have more to say, or you could try the Adults part of the forum -- it is usually more active.

Good luck!!

wuffles · Jan 15, 2008

Hi Laurie

I think where you're getting confused is that you don't "develop" CF -- you are born with those two defective genes. So previously, when you were diagnosed as a carrier, they would have done a limited test which did not screen for all mutations. Delta F508 is the most common mutation and I am assuming this is the one they found in you many years ago. Your other mutation is uncommon so it was probably not tested for all those years ago (or possibly not even "discovered" yet!).

I don't want to confuse you any more, but do you know what mutations your sister had? If she had a different mutation to you, it's possible that one of your parents also had two copies of the CF gene.

If you have made it to your age without a diagnosis it sounds like you are relatively healthy thus far. It's great that you have made an appointment with a CF specialist. They will help you be proactive about your future treatments. I'll be honest and say that your lifestyle will probably change a lot at this point, but keep in mind it's all done to keep you healthy!

I'm sure other people will have more to say, or you could try the Adults part of the forum -- it is usually more active.

Good luck!!

Mommafirst · Jan 15, 2008

Wow -- that is pretty interesting, Laurie. And I must admit, it scares the beejeezes out of me as it related to my carrier boys. I'm sorry you lost your sister to this awful disease and sorry you have been diagnosed. I agree that there is a great deal of really good treatments and medicines today that didn't exist 20 years ago.

Welcome to the forum. I'm sure you will find a wealth of information and support.

Mommafirst · Jan 15, 2008

Wow -- that is pretty interesting, Laurie. And I must admit, it scares the beejeezes out of me as it related to my carrier boys. I'm sorry you lost your sister to this awful disease and sorry you have been diagnosed. I agree that there is a great deal of really good treatments and medicines today that didn't exist 20 years ago.

Welcome to the forum. I'm sure you will find a wealth of information and support.

Mommafirst · Jan 15, 2008

Wow -- that is pretty interesting, Laurie. And I must admit, it scares the beejeezes out of me as it related to my carrier boys. I'm sorry you lost your sister to this awful disease and sorry you have been diagnosed. I agree that there is a great deal of really good treatments and medicines today that didn't exist 20 years ago.

Welcome to the forum. I'm sure you will find a wealth of information and support.

Mommafirst · Jan 15, 2008

Wow -- that is pretty interesting, Laurie. And I must admit, it scares the beejeezes out of me as it related to my carrier boys. I'm sorry you lost your sister to this awful disease and sorry you have been diagnosed. I agree that there is a great deal of really good treatments and medicines today that didn't exist 20 years ago.

Welcome to the forum. I'm sure you will find a wealth of information and support.

Mommafirst · Jan 15, 2008

Wow -- that is pretty interesting, Laurie. And I must admit, it scares the beejeezes out of me as it related to my carrier boys. I'm sorry you lost your sister to this awful disease and sorry you have been diagnosed. I agree that there is a great deal of really good treatments and medicines today that didn't exist 20 years ago.

Welcome to the forum. I'm sure you will find a wealth of information and support.

ashton2005 · Jan 15, 2008